Big Data and Artifcial Intelligence for Achieving Universal Health Coverage: An International Consultation on Ethics Meeting report 12–13 October 2017, Miami, Florida, USA Big Data and Artifcial Intelligence for Achieving Universal Health Coverage: An International Consultation on Ethics Meeting report 12–13 October 2017, Miami, Florida, USA WHO/HMM/IER/REK/2018.2 © World Health Organization 2018 Some rights reserved. This work is available under the Creative Commons Attribution-NonCommercial-ShareAlike 3.0 IGO licence (CC BY-NC-SA 3.0 IGO; https://creativecommons.org/licenses/by-nc-sa/3.0/igo). Under the terms of this licence, you may copy, redistribute and adapt the work for non-commercial purposes, provided the work is appropriately cited, as indicated below. In any use of this work, there should be no suggestion that WHO endorses any specific organization, products or services. The use of the WHO logo is not permitted. 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MEETING REPORT III CONTENTS ORGANIZING PARTNERS ........................................................... iv ACKNOWLEDGEMENTS ............................................................ v BACKGROUND TO AND PURPOSE OF THE CONSULTATION .............................. vi EXECUTIVE SUMMARY ............................................................ vii 1. THE ROLE OF ETHICS IN PUBLIC POLICY .......................................... 1 2. CHALLENGES AND OPPORTUNITIES OF USING INFORMATION TECHNOLOGY FOR IMPROVING HEALTH ........................................................... 3 3. ETHICAL REFLECTIONS ......................................................... 7 4. EMERGING THEMES ........................................................... 8 5. CASE STUDIES FROM AROUND THE GLOBE ....................................... 9 6. SYNTHESIS................................................................... 11 ANNEX 1. LIST OF PARTICIPANTS .................................................... 12 ANNEX 2. AGENDA .............................................................. 15 IV BIG DATA AND ARTIFICIAL INTELLIGENCE FOR ACHIEVING UNIVERSAL HEALTH COVERAGE: AN INTERNATIONAL CONSULTATION ON ETHICS ORGANIZING PARTNERS GLOBAL HEALTH ETHICS TEAM, WORLD HEALTH ORGANIZATION WHO has had a longstanding interest in health data and information, notably through its department of Information, Evidence and Research. The aim of the department is to strengthen the availability, accessibility, quality, reliability and use of health information in WHO Member States and development partners. Within the department, the Global Ethics Team addresses ethical questions that arise in technical programmes, in support of Member States and in consultation with its collaborating centres and experts. INSTITUTE FOR BIOETHICS AND HEALTH POLICY, MILLER SCHOOL OF MEDICINE, UNIVERSITY OF MIAMI As the WHO Collaborating Centre in Ethics and Global Health Policy, the Miami centre has long been a partner with WHO in addressing challenges related to health information technology. A leader in the field of ethics and biomedical informatics, the Miami centre conducts research on ethical issues in research, public health and clinical practice and on issues of health information technology arising in international contexts. Links to most of the presentations summarized below are available at https://bioethics.miami. edu/who-collaborating-centre/bigdata/index.html. MEETING REPORT V ACKNOWLEDGEMENTS The consultation was jointly organized by WHO’s Global Health Ethics Team, under the leadership of Dr Abha Saxena (Coordinator) and Dr Andreas Reis (Technical Officer), and by Dr Kenneth Goodman, Director of the University of Miami Miller School of Medicine Institute for Bioethics and Health Policy, a WHO collaborating centre. Guidance was provided by Dr Vasee Moorthy (Coordinator, Research, Ethics and Knowledge Management Unit, WHO) and Dr John Grove (Director, Department of Information, Evidence and Research, WHO). WHO gratefully acknowledges the University of Miami Miller School of Medicine Institute for Bioethics and Health Policy for the co-organization and generous sponsorship of this expert consultation. Particular thanks are given to Dr Goodman for his invaluable advice and management of the event, and to the following faculty and staff at the Institute: Dr Sergio Litewka, Rosario Isasi, Dr Adriane Gelpi and Ana Bezanilla. WHO thanks all the participants in the consultation (see Annex 1) for generously contributing their time, knowledge, experience, insights and wisdom. The contributions of the member institutions of the Global Network of WHO Collaborating Centres for Bioethics are also gratefully acknowledged. Particular thanks go to the rapporteur, Dr Joan Dzenowagis, for providing the first draft of the meeting report and to Dr Goodman for revising it. VI BIG DATA AND ARTIFICIAL INTELLIGENCE FOR ACHIEVING UNIVERSAL HEALTH COVERAGE: AN INTERNATIONAL CONSULTATION ON ETHICS BACKGROUND TO AND PURPOSE OF THE CONSULTATION WHO and the University of Miami Miller School of Medicine Institute for Bioethics and Health Policy have long collaborated in identifying and addressing ethical issues in global public health. Over the years, they have engaged stakeholders and encouraged debate, with the goal of providing guidance and standards in key topical areas. Topics of critical concern to WHO Member States in achieving universal health coverage are the acquisition, protection, governance and sharing of data and information on health. Countries, agencies and development partners face important challenges in this area, in part because of the rapid improvement in and availability of computing and information technologies, tools and methods as well as the size, scope and sources of data sets. In health and medicine, expanding public and private sources of data (including non- traditional sources) and the ever-increasing capability to analyse, visualize and model data reveal patterns, problems and evidence for action for use by researchers and policy-makers. The tools, methods and technologies used in “Big Data” and artificial intelligence (AI) are already being used to improve health services and systems, and the policies, practices and capabilities to support them must keep pace. This is a major challenge, given that more human lives will be touched by health information technology than any other technology, ever. Among the policy challenges are those of ethical collection, analysis and sharing of health data. Framed as ethical, legal and social issues, these include: the requirement for and scope of valid consent regarding data; protection of privacy, confidentiality and security; challenges of governance (ownership, use, publication, sharing); appropriate use of WHO-stewarded data and information; appropriate uses and users of public health and clinical decision support systems; and